The EMQN, in conjunction with EuroGentest, is organising a Best Practice meeting to update the 2002 EMQN Best Practice Guidelines for Haemoglobinopathy Testing. The workshop will take place in Leiden, The Netherlands, on 5-6th September 2012.


Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and the National Alliances of Patient Organisations at the national level. February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 European countries. On this day hundreds of patient organisations from more than 40 countries worldwide are organsing awareness-raising activities converging around the slogan “Rare but strong together”.  


Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand! Get involved! The focus of this year's event is Solidarity.


More information: Rare Disease Day 2012


The Thalasaemia International Federation (TIF) provides on its web site approved presentations from this year's TIF event in Antalya, Turkey (i.e. the 12th International Conference on Thalassaemia and the Haemoglobinopathies and the 14th TIF International Conference for Patients and Parents). The presentations are accessible from the TIF website and provided as PDF files and cover a wide variety of topics surrounding thalassaemia.


The Malaria Atlas Project (MAP) is a non-profit project which brings together researchers based around the world with expertise in a wide range of disciplines from public health to mathematics, geography and epidemiology. MAP aims to generate new and innovative methods of mapping malaria risk and to produce a comprehensive range of maps and estimates that will support effective planning of malaria control at national and international scales.

The MAP team have assembled a unique spatial database on linked information based on medical intelligence, satellite-derived climate data to constrain the limits of malaria transmission and the largest ever archive of community-based estimates of parasite prevalence. These data have been assembled and analysed by a team of geographers, statisticians, epidemiologists, biologists and public health specialists.

More information: The Malaria Atlas Project

Deep project

The multination DEEP project has been launched, a 4-year project aiming to improve the chelation treatment of children with thalassaemia. The primary objectives of the project are to perform pharmacokinetic, efficacy and safety studies of deferiprone in paediatric patients and to provide a new formulation specifically tested for young children. Specifically, DEEP tests pharmacokinetic properties of deferiprone in children under 6 and the efficacy and safety of deferiprone compared to deferasirox therapy in paediatric patients. It further aims to provide long-term data on events potentially related to deferiprone use (alone or in combination with deferoxamine) in children, as observed in a timeframe of 3 years of clinical practice, and to provide a pharmacoeconomic evaluation of deferiprone in the concerned aged group and in comparison with other chelating treatments. The DEEP Consortium is composed of 15 recruiting European Centres (from Italy, Greece, Cyprus) and 7 recruiting non-European Centres (from Egypt, Tunisia, Albania) with scientific partners from the EU and the pharmaceutical group (ApoPharma and APOTEX) based in Canada and in Europe as an industrial partner.